I had my first Migraine at age 15. It started with the typical visual aura – a small zig zag point in my vision, slowly expanding out across my vision and I was then hit with the headache. After describing what was happening to my mum, she informed me it was a Migraine, as she suffers them too. Looked like I had inherited it from my mum’s side.

I suffered Migraines rarely after that, maybe one every few years. They always took the same path, the zig zag aura followed by a blinding headache where everything is just too bright, sometimes accompanied with vomiting, but usually just nausea. I could never ever work out what caused them. Was it chocolate, cheese, lack of sleep, too much sleep, missing meals, monthly cycle, hormones. I could never ever pin it down to one thing.

 

Things stayed this way through my 20’s and up until I hit my late 30’s.

However, it is at this point when things changed for me. The visual aura seemed to want to bring some mates along to the party. So, it brought along:

  • Numbness. My face started feeling funny and odd. My left arm started feeling weird and not right.
  • Motor Problems. I was terrified from the numbness, what was going on? I tried to get up to go get my phone to call my husband. But I got as far as sitting up in bed. Nothing worked right, and I was stuck. I gave up and lay back down.
  • Word Recall: Now this is when I got really scared. I realised I couldn’t remember the names of my children.
  • Unfortunately, about 6 months later, one evening, all the Auras decided to turn up again, uninvited as always and this time brought more mates along and threw a party. Now, this one was what I call the big one.

I couldn’t feel all my face properly; my tongue was numb. My left arm was numb. My legs felt numb. I was confused as hell. I couldn’t walk properly. I couldn’t move my mouth properly to form my words clearly and I couldn’t recall words to speak with either. This time it seemed like I was having a stroke for sure. I got taken to hospital in an ambulance and a nurse there told me not to worry – that it seemed like a Hemiplegic Migraine.

I started getting the numbness in my face – along my eyebrows and my eyes, my nose, my tongue, my cheeks. My left arm and both my legs went numb and I had difficulty walking. When I stood up I had intense vertigo and balance issues and had to sit back down. I couldn’t speak properly, I felt like I was dreaming. My hearing went muffled and I was ‘not right’ at all. I knew it was a Migraine. After researching the new auras of Vertigo, balance issues, and hearing issues I’ve come to think this is like Basilar Migraine. Eventually I became very sleepy and I just fell asleep for 3 hours after which I came to again and felt very sick. I had a blinding headache for two days after that.

Collectively, as a group I think we are misunderstood. We are suffering with something that 99% of the population cannot comprehend or sympathise with. Until the Medical field can recognise this, the public will not. If you mention to someone that you get a complex migraine variant you’ll likely be met with ‘oh I know Jane Doe who gets really really bad headaches too and sometimes has to lie down’ Whenever you start to describe one of the scary auras you get usually people look at you like you’re a bit crazy wondering if you’re for real.

So, until there is widespread acceptance and education about Complex Migraines, we need to rely on one another and sites like this to educate ourselves and find solace that there are others out there who do actually also experience what we do.

(edited)

Ruthie, Melbourne.